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posted January 10, 2004 05:01 AM     Profile for daveena   Author's Homepage   Email daveena     Send New Private Message   Edit/Delete Post   Reply With Quote
:Hi there,
My name is lillian, and my daughter Daveena had been getting information/support & help for my husband John, who has recently come home after 1 year of hospitalization,he had been diagnosed with ARDS, which meant he was on the venterlator for 5months, tracki 2 months, and feed peg for 2 months, and he finally came home against all odds at the end of November 03.
He has an oxygen consantraitor with a 50ft tube which helps him to get around the house. His oxygen level varies from 1 - 2percent, depending on how he is on that day.
He does exercise, and is doing very well with his motivation as much as he can, but is constantly breathless, due to coughing, which he has difficulties controlling.
He does breathing exercises and has tried codiene linctus, and various others, but they now don't seem to supress his cough!
This is causing him sleepless nights, and he is getting very depressed and frustrated.
Please if anybody has experienced this and can help with any suggestions at all, we would be very grateful.
With his ARDS it has caused scareing and fibrosis of his lungs.
look forward to your replies.
Lillian Irvine. England

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posted January 10, 2004 05:39 AM     Profile for Louise   Email Louise     Edit/Delete Post   Reply With Quote
Hi Lillian,

I am very happy that your husband John survived the Ards. I too was sent home from the hospital wearing oxygen all the time. I would have spells of coughing that I had no control over. I know how frustrating and depressing it is to drag that 50' tubing around the house every step of the way. I still have to wear the oxygen at night but am now on an "As Needed" basis during the day and the coughing stopped about two years ago.
One thing that really made me feel better was going to a liquid oxygen portable unit so that I could get out and about. I use the Helios system which only weighs about 3 or 4 lbs. when full. Has John checked into something like this yet?
I assume that he sees his pulmonologist regularly for PFT's etc. Perhaps he had an underlying respiratory problem such as asthma before Ards. Not being a doctor I don't know that this would cause the coughing, but it might be another reason for needing the oxygen yet. Don't hesitate to question his doctors and voice your concerns.
Please know that I will continue to keep you, John and your family in my thoughts and prayers.


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posted January 10, 2004 05:46 AM     Profile for Eileen   Author's Homepage   Email Eileen     Send New Private Message   Edit/Delete Post   Reply With Quote
Hi Lillian.

For anyone who wants to look back at the old posts about your husband, and the replies, here are the link:

Here is another one:

And here is the last:

As for this new issue, the coughing, I coughed for months post ARDS. We do have posts on here regarding coughing, and I know that when I went to the doctor to inquire, complain, ask what to do, was given some medication, but other than that, I felt basically that the response was that you should be grateful that you lived and this is a minor inconvenience. That was over eight years ago.

But the reality is that it is a huge annoyance. I had to have water all the time, and it gets in the way of eating, exercising and building up one's strength and confidence in recovery.

Have he talked to a respiratory therapist? Tried pulmonary rehab?

As far as depression, which is obviously in part to this difficulty in recovery,
it seems that most ARDS survivors suffer some sort of varying degree of depression or PTSD at some point post ARDS. Has he spoken to anyone, a social worker, psychologist, or someone like that?

What does anyone else have to say about this coughing issue, one that comes up all the time? I had water with me all the time, as I said, more month after month, but there has to be something better. Thanks, Eileen

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Rhonda Hager
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posted January 11, 2004 12:38 PM     Profile for Rhonda Hager   Author's Homepage   Email Rhonda Hager     Send New Private Message   Edit/Delete Post   Reply With Quote
Please know that I , too, coughed and am still coughing a year a half later....I am praying for John and you.....Blessings....
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posted January 17, 2004 05:28 AM     Profile for daveena   Author's Homepage   Email daveena     Send New Private Message   Edit/Delete Post   Reply With Quote
Hi there,

Thank you all for your input-help & suggestions, we are trying a few of them, jon is still coughing a lot & is feeling rather depressed, he has a psychologist coming to see him on Wednesday. The psychologist is the same person he had in hospital, and it seemed to help him, he gets irritable at times.
I haven't managed to get time to post back until now, and i'll keeping checking the message board.
Thank you Lillian

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posted January 18, 2004 02:01 AM     Profile for Tina   Author's Homepage   Email Tina     Send New Private Message   Edit/Delete Post   Reply With Quote
I am so glad that your husband survived his long difficult battle with ARDS!
I still have alot of difficulty with coughing, especially if I talk too much. Like Eileen, I found water extremely helpful. I still carry a bottle of ice cold water with me whenever I leave my home. I had a voice therapist for about six months post-ARDS, and she told me that cutting down (actually she said cutting out - but I'm a coffee addict) my caffeine intake would help with the coughing. Caffeine dries out the lower lining of the throat and causes more coughing. I did decrease my caffeine intake significantly, and it really did help.
I'm glad that your husband will be seeing a psychologist for his depression. Depression is not uncommon in ARDS survivors. I personally have been on an anti-depressant medication since ARDS, and have found it very helpful.
Good luck to both of you, and keep us posted as to his progress.

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posted January 18, 2004 05:14 AM     Profile for Debbie   Author's Homepage   Email Debbie     Send New Private Message   Edit/Delete Post   Reply With Quote
I also have coughing spells.It really becomes a problem when I'm at work, dealing one on one with customers. They look at me like I have something they can catch. I don't know how many times in the last coulpe of days that I have been able to work, that I'm not contagious. I am a newbe to this ARDS stuff, so I also have a lot of questions.

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posted January 19, 2004 02:37 PM     Profile for Emma   Author's Homepage   Email Emma     Send New Private Message   Edit/Delete Post   Reply With Quote
I have to take a medication 2x a day in order to control coughing spells. If I run out & have to go over the weekend, I start having severe coughing spells. Have any of you been on medication & it didn't work?
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